Saturday, April 28, 2012

For about the last year, I have been thinking about going fishing. That probably sounds funny to most of you. But, when I was young, my father pretty much fished every day of his life. He would work the night shift as a pressman for the daily newspaper, come home, eat breakfast, go fishing and then take a nap. He'd get up from his nap, eat dinner and go to work. I loved going fishing with my dad because it was about the only time I saw him and it was alone time with him. We would always get in an argument because my dad would be trolling the boat and if he caught a fish while trolling we would stop, put down anchor and fish there for awhile. If I caught a fish while trolling he wouldn't stop but go somewhere else to fish. We used to laugh about this all the time.

My dad died about 29 years ago. My big regret has always been that I had not had my son when my father died. My dad would have loved Alan. I see a lot of my dad in Alan and that makes me proud. I miss my dad. My mom and I weren't that close and I guess dads and daughters are. After my dad died I took one of his fishing rods and have it mounted in my living room. It's a constant reminder of that constant person in my life. I haven't been fishing in over 30 years and the more I think about my dad the more I want to go fishing.

My brother visited about a month ago and he made the comment he wanted to go fishing. I was so surprised he said that because I hadn't told him what I was thinking, and he wasn't the first one to volunteer to go fishing with dad. He would go on occasion, but he certainly wasn't the first one in the boat. And, I don't remember him cleaning fish with dad and I. He probably did, but I don't remember that. So, we had this conversation while he was here about fishing and I needed to buy a rod and reel because one way or another this summer I am going fishing. I've said a few things to friends about wanting to go fishing and although they fish on a regular basis I haven't been given an invitation to go with them -- so I'll do it on my own. And, maybe I'll even catch enough for my dinner.

Wednesday, April 25, 2012

Last night there was a dinner to give out awards and as you can see Coach Summitt and her son were there to receive an award handed out by Maria Shriver. Meredith Viera was the guest host and Jane Seymour was also on hand.

Today we are heading to Capitol Hill to talk with our legislators about increased funding and support for Alzheimer's legislation.

Tuesday, April 24, 2012

I'm in the nation's capital this week for the annual Alzheimer's Association Advocacy Forum. There are over 700 people here representing all fifty states and the District of Columbia. Yesterday, I had a meeting with others with Early stage Alzheimer's and got to meet some new friends. Some had ties to Atlanta in one way or another and I hope our paths will cross again. Many at the meeting were there for the first time and I think it helped them to see so many of us "like them".

Today we have a long day. Breakfast starts at 6:45 with our first meeting at 7:30 and our last event starting tonight at 7:30 p.m. A visit to Congressman John Lewis' office is scheduled for this afternoon and tomorrow we will be going to the Hill for meetings with our other legislators from Georgia to ask for their help on a variety of issues. It will be a long two days but worth it. I'll try to post some photos tomorrow.

Wednesday, April 18, 2012

This blogspot that I am using keeps changing on me and I always get a different screen while trying to post. I need someone to help me with it or I'm not going to be able to post any longer because it is too confusing. So, I might be absent for awhile but I'm going to keep trying.

Next week I'm heading to Washington DC for the annual Alzheimer's Advocacy Conference. I'm anxious to see old friends and to see what we are facing in the year to come with Alzheimer's funding as well as research is taking us. Hopefully, there will be some good news on the horizon.

In my last post, I spoke of some funerals that I had recently gone too. Unfortunately, since then another person I know had his life cut short this past week. A brain aneurysm took the life of a vibrant man in his 40's. A friend to everyone he met, he leaves and beautiful wife. Oh so sudden, and oh so sad. My heart goes out to Amy for her loss and to all of us who knew Jon. The love they showed for each other was to be envied. You will be missed Jon -- may your rest in peace.

Having said that -- I keep going back to how short life is. Even if we live to a ripe old age are we doing everything we can to make it a happy life? We need to, and while I think that -- I wish I was strong enough to take my own advice. But, sometimes, that is hard to do isn't it?

Monday, April 09, 2012

This post is going to be long and it is going to jump around a lot, so hang in there with me. I've been making notes about some of the things I wanted to write about and the topics are all over the place. I can't come up with a way to string them all together, so I'll try to at least group my thoughts. This is one of those instances where I can't get everything to flow smoothly in my brain, so I'm doing the best I can today. Most of the time I just put it off because I can't get it to come out like I want -- but this time I'm going for it!

I've been to two funerals in the past three weeks. Both lives cut way too short. The services were unique in their own way. But both services brought home to me that there is never enough time to be with your family and friends. One minister said "Death ends a life, not a relationship". But when I think of Alzheimer's I think just the opposite -- Alzheimer's ends a relationship, not a life. As the disease progresses it is harder and harder to have a "normal" relationship with those you love. It's constantly changing and much sooner than you would like -- the relationship becomes one sided with those afflicted inching away. I guess that is why I've always said "I have the easy part".

The last funeral I attened was for a friend that had a terminal illness and knew she was dying. She had given her pastor instructions on what she wanted her memorial service to be like -- the hymns to be sung, the prayers to be said. As I was sitting there I couldn't help but think of my own family. We've talked about what we want to happen to us when we die but never about any type of service. After this particular service I was laughing with some friends about the fact that when I die no one will probably know. They asked me why and I told them that these days it costs money to put an obituary in the paper and anyone who knows my husband knows that he would never spend money like that! So, I've told them if they don't hear from me one way or another for a month or so they might want to check! In all seriousness, I'm going to give it some thought and try to steer my family in the right direction anyway. We've given a lot of other things thought. We've gotten all of our legal "stuff" worked out. And, as bad as this may sound to you, I've even selected photos and items I would like to have in my room if and when the time comes to place me in a home. I have to believe that if some things are important to me now that they will be then. Although I won't be able to communicate it.

Friends -- I've talked a lot about firends and alzheimr's. How it was difficult for some of my friends after I was first diagnosed. Many just walked away. Some have retured and others have not. That's o.k. I'm meeting new friends and at this stage of my life I'm kind of surprised by that. You usully think of friends as being those life long friends from elementary, high school or college. But since I've been out of school for so long and live far away from my home town, I suppose its only right that my friends are somewhat local and easy to find time to visit with. My new friends intrigue me because some are much younger and some I have met by happenstance.

It saddens me that several of my friendships I thought were pretty solid have gone by the wayside. I've tried to reach out to them on numerous occasions with no response. I would really like to know what happeneed. If I did something wrong I want to apologize even if the friendship is beyond repair. I want to know because I don't want to make the same mistake with others. It's o.k. if they don't want to be friends any longer -- I'd just like to know why. The thing that probably gets to me the most is I didn't see it coming. Sometimes you do. Sometimes you just drift apart. I didn't realize there was a problem with these friends. I hope some day I'll know and I hope in some way some of these people will work themselves back into my life -- before I can't remember them.

Major meltdown -- A few weeks ago I was out at our local Target store. I hadn't been in there for awhile and it looked as if they were in the middle of a makeover. At first it didn't bother me, but after about fifteen minutes in the store and a cart half full -- I started to panic. I didn't know where things were, everything looked different and I just got disoriented. I literally froze in place. I knew I needed some help. My husband was out playing tennis so I couldn't call him. I checked my phone for my one number dialing and everyone on there didn't live in Athens (I have since changed my dialing numbers). Finally someone who knew me walked by and realized I was having some problems. I just needed to get out of the building and she helped me. I haven't been back since. After telling this story to several people they all asked me the same thing. When you are traveling and go into a store that is unfamiliar to you how does that affect you? My answer probably doesn't make a lot of sense to them -- but usually I am with someone and I'm not expecting merchandise to be in a certain place or on a certain shelf. The things that catch me off guard seems to be a trigger point for me.

Money -- You would think by now I would just stop trying to make change. But every now and then I try to test myself on it -- it's simple right? A few days ago I was buying something and it came to a total of $26.10. It took me awhile to get the $26 counted out. I was so proud of myself. Then came the $.10. Although I could hear the clerk tell me I was ten cents short, I couldn't physically take the dime out of my wallet. I knew what I was suppose to do -- but the whole process couldn't make it from my brain to my fingers. This is just so frustrating -- I need to just stop testing myself. By the way -- I asked the clerk if he minded just taking the dime out of my wallet. Yes, he looked at me pretty strange and he did it....but hey....welcome to my world.

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About Me

I was diagnosed with Early On Set Alzheimer's when I was 46 years old. I am now 61 and working in Advocacy to help fight this disease. I speak on a local and national level about dealing with Alzheimer's while living it. Hopefully, my perspective can and will help others.